What were your side effects of proton therapy both during and after?

Gleason 6 diagnosis 9/2022. Mayo Clinic Rochester 5 Proton Beam treatments finished 1/19/2023. PSA has dropped to 2.59 in April 2023.
Side effects were urination slow stream which started after injection of SpaceOAR hydrogel to protect rectum. Likely caused by pressure on prostate and swelling of prostate from all of the prodding, poking and placement of carbon markers. Side effects lasted until May 2023. Having largely disappeared. No ED, no change in libido, small decline in seminal volume upon climax.
Bottom line, minimal side effects.
Best of luck for a successful treatment. Where are treatments scheduled?

I received proton and hormone therapy in early May. During my treatment, I really didn’t have much in side effects, however in the weeks after, I had diarrhea and trouble urinating, I was prescribed Flowmaxx and take anti diarrheal. I also has issues, from the hormones with ED and dry orgasms. I have been told that I should return to “normal” as the effects wear off. I am finally regaining control of my bowel movements. I also had SpaceOar inplanted and had no issues with that. I was stage 1 intermediate Gleason 4+3/7. It’s been a month since the end and I’m doing well. I really hope that my erections and such come back naturally, as I told my nurse that I do not wish to have to take another pill. Good luck to you.

Thanks for the reply. Was was your PSA pre-treatment?

I am starting on Tuesday next week in Japan (long-term resident). 21 treatments at 67GyE.

Interestingly at this institution, while I was free to get SpaceOAR, they were not recommending it basically saying that the risk/reward equation was not particularly favorable.

Thanks for the reply. Was was your PSA pre-treatment? I assume you haven't yet checked post-treatment.

How many cores were positive? 4 out if 12 were positive in my case. Only one 4+3, the rest 3+4.

How long will you be on hormones?

My PCP was concerned because my psa was fluctuating and he ordered a biopsy. My psa was about 6. I don’t remember how many cores were positive, but one of the first things done was to have one genetically tested and in that process it was determined that my cancer was just over the line on the bad aggressive side. My surgeon said that I wasn’t a candidate for surgery and was referred to an oncologist, who first wanted brachytherapy, but I had issues with that, so that left radiation. I choose the high dose therapy because I didn’t want to go for 30+ treatments. I was given a total of three hormone shots, the first two Firmagon, was a bitch and given another one of a different name. I am done with the shots, thank God. I’m just dealing with and waiting for the side effects to subside and figure I should be back to normal in the fall. My side effects are diarrhea, no erections and dry orgasms. And no I have not gotten another psa, it’s scheduled for August. I can only hope that you have a strong and supportive wife/lady with/for you to help you get thru this, I faced it alone and it sucks. I insisted on the SpaceOar gel and my oncologist was impressed I brought it up before he did. I had no problems with the gel. Be prepared to have to relearn how to go the bathroom, as you’ll see when it starts, it’s not bad but if you feel the urge to go, be on the toilet because at first you’ll have little control. I am finally at the point where I can control what I need to do, mostly. And lay in a stash of anti diarrheals. Also ask for ointments for itching and moisture. The radiation itself wasn’t bad and really didn’t have issues, about midway thru I could feel something happening down there, just a sensation but no pain or bleeding. I wish you all the best, be strong, be a Warrior and ring the Bell proudly and loud. Good luck Sir.

My PCP was concerned because my psa was fluctuating and he ordered a biopsy. My psa was about 6. I don’t remember how many cores were positive, but one of the first things done was to have one genetically tested and in that process it was determined that my cancer was just over the line on the bad aggressive side. My surgeon said that I wasn’t a candidate for surgery and was referred to an oncologist, who first wanted brachytherapy, but I had issues with that, so that left radiation. I choose the high dose therapy because I didn’t want to go for 30+ treatments. I was given a total of three hormone shots, the first two Firmagon, was a bitch and given another one of a different name. I am done with the shots, thank God. I’m just dealing with and waiting for the side effects to subside and figure I should be back to normal in the fall. My side effects are diarrhea, no erections and dry orgasms. And no I have not gotten another psa, it’s scheduled for August. I can only hope that you have a strong and supportive wife/lady with/for you to help you get thru this, I faced it alone and it sucks. I insisted on the SpaceOar gel and my oncologist was impressed I brought it up before he did. I had no problems with the gel. Be prepared to have to relearn how to go the bathroom, as you’ll see when it starts, it’s not bad but if you feel the urge to go, be on the toilet because at first you’ll have little control. I am finally at the point where I can control what I need to do, mostly. And lay in a stash of anti diarrheals. Also ask for ointments for itching and moisture. The radiation itself wasn’t bad and really didn’t have issues, about midway thru I could feel something happening down there, just a sensation but no pain or bleeding. I wish you all the best, be strong, be a Warrior and ring the Bell proudly and loud. Good luck Sir.

Thanks for the reply. Was was your PSA pre-treatment?

I am starting on Tuesday next week in Japan (long-term resident). 21 treatments at 67GyE.

Interestingly at this institution, while I was free to get SpaceOAR, they were not recommending it basically saying that the risk/reward equation was not particularly favorable.

I wonder if the dry orgasms were the result of the hormones. Perhaps so??